Retinal Specialist and psychologist

It has been an eventful day. My friend, Kimberly Holmes, drove me and Sam to Madison for our appointments. My appointment with the retina specialist went really well. He said the cyst in my right eye was unlike anything they've seen before, but now it's mostly gone and they are scratching their heads! Praise Jesus!! 

Then, I find out Kimberly's van battery died. She had trouble getting people to help her. Finally, Someone was gracious enough to give us a jump and we went on to our next appointment - Sam's dyslexia appointment! She's super thrilled. As you can tell!

Today's appointment for Sam was mostly a meet and greet with the psychologist. Basically, they just want to make sure that it really is dyslexia and not a behavioral problem. So Sam had to answer around 40 questions about things like how she handles situations, drugs, family life, etc. Next appointment Sam will have to take a 3 hour test for dyslexia. It will be brutal and stressful.

Where to go from here?

I took a week medical leave from work to work out if I can hold a job with my new visual disability. I noticed my reading ability has been hampered. It takes me longer to read now and I already was a slow ready because of dyslexia and my damaged left eye. Add in the scotoma maculopathy of my right eye and reading is a bit grueling.
It's like having a chip in middle of one of the lenses in your glasses. Yeah, it's annoying, but you can see around it and, in general, you can ignore it. Until, you need to see things in detail like reading. Then that small chip, that was so easy to ignore before, becomes prominent. The difference is, with a chip in your glasses as you move your eye past it you can see. My "chip" follows every where I look. It seems to get in the way of the first letter of every word. If the font is big enough my brain can fill in what the word is, but that takes extra time and energy. It's exhausting if done for a long period of time. Can I manage a job with this new hindrance? I honestly, don't know. I've been praying a lot and have been prayed for by others. Can work accommodate for this? Is there even a way to accommodate for this?

I'll never see things the same way again.

Since Sunday I've been struggling with what I thought was a visual aura.  But, as days past and the aura wasn't going away and I never got a migraine my neurologist was worried that is was something more serious and wanted me to see an ophthalmologist asap.

So They put me through a bunch of test. Some before dilating my pupils and some after.

Sam says I look creepy with dilated pupils.

The conclusion? I have a lesions in my eye. Let me try and break this down.

This is a picture of my left eye. Sure, it has it's problems, like a lazy eye and astigmatism but it doesn't have a lesion. 

Now, here is a picture of my right eye with it's new fancy lesion. Can you see the difference? It has a dip. That is bad. That is what is causing my vision problems.

Here is another view for a different test. This one is a little harder to see. Where the arrow is it should be a darker pink perfectly circular area. If you notice, it has this lighter pink area with a tint of orange chunk in it. That is the lesion.

Such a small thing to cause so much trouble.

According to the ophthalmologist, this new development has nothing to do with MS. My doctor said I was just that lucky. Yes, she said that. Also, there is a pretty good chance that this is permanent. They scheduled me to see a retina specialist in April to see of there are any changes and to run more tests.

This thing makes reading difficult. My job is to read a computer screen. Even if it is for only 4 hours, it's exhausting and I don't know if I can do it everyday. I got a letter to excuse me from work for the next week, but then what? My doctor said I may just get used to it. I pray that it will either go away or I will be able to work around it.  Only time will tell.

Failing Vestibular Therapy.

So I totally thought I didn't need to go to vestibular therapy. My dizziness wasn't as bad as it was a few weeks ago. The therapist, Carrie Barrett of Dean Clinic, decided to test me. I failed. She had me stare at a tongue depressor with a large dot in it and shake my head back and forth as fast as I could without loosing focus on the dot. That lasted less than 30 seconds. I got so dizzy, nauseous, and sweaty they had to get me water and a cold, wet towel on the back of my neck. That nauseous feeling didn't go away for about 4 hours.

She also wanted to test my higher motor functions while doing simple tasks. I was seated in a chair then, I had to stand up and walk as fast as I could to an established point, then back to the chair and sit down while she timed me. Then she had me do the same exercise while carrying a full cup of water and not to spill it. The last exercise, I had to walk while spelling simple words backwards. With each new challenge I got slower. She said the most concerning was how much I slowed down while I spelled.  It is a sign that my higher functions are damaged. I basically can't walk and talk at the same time, Ha ha ha ha! She wants to test this at least once a year, or more, to see if I'm experiencing a downward trend. If I am, there are safety concerns. 

But, for now, I had to do my gazing exercises. 

The image below is what I have to do 2-3 times a day:

I should video myself doing it, because it looks really weird!

Physical Therapy for vertigo

Had my physical therapy appointment today for my dizziness. After running a series of physical tests, the doctor concluded I do not have BPPV. My dizziness is probably due to the lesion that is touching my cerebellum. So, next they want me to see a neurologist physical therapist. The theory is, that I might be able to retrain parts of my brain to help with my stability. I guess we'll see.

Memory poblems with my new job.

MS can be sneaky. I knew I had a bad memory but I didn't realize how bad it has become until I got this new job. I'm really struggling with the ability to not only learn but to retain.
We had an all day training lesson today. Whenever we had a "challenge" to check our knowledge, I failed every single time. I was the only one who had this problem. It's gotten so bad, a person has been assigned to me after training was over. I'm the only one who has this extra help. He even asked me if I have memory problems, because that's how obvious it is. I got so stressed trying to keep up my left side of my face started to feel like novocaine was wearing off and my right leg got muscle stiffness. I have to admit I get irritaed with people when they say, "you'll get it". Honestly, it feels dismissive and patronizing even though I know they're not.
They don't understand the horror of not remembering the day before. The panic feeling knowing you will forget everything you learned that day. Some would say, by thinking that way I'm making it happen. Maybe I should carry around a MRI picture that shows the lesions in the area of the brain responsible for  memory.
I have to do things repetitively constantly to retain the knowledge. This job has so may exceptions to the exceptions that may only be done a few times a month or less. That is not a enough for me to retain the knowledge. I got an email today that said I did something last Friday that requires follow up. I don't remember even doing it or what I have to do.
While I'm thankful that they haven't given up on me I wonder how long they are willing to put up with someone like me. Training is suppose to be over at the end of this week. I feel like I need another month.

Found this very dry, but informative video that explains the memory problems I have. It acually makes me feel better knowing that I'm not imagining the struggle.

First major MS episode at new job. NOT COOL!

Started working at Grainger 1/16/17. Yay!! I have been in brutal training for the past week and a half. So. Much. To. Learn! I haven't felt this inept since geometry in highschool. Im in a class of 10 people and my trainers have said I am doing fine. I have a hard time agreeing with them, but I'm trying to stop being so hard on myself.
Anyway, I have had some MS problems since starting. The first day of training on the phones was this Tuesday and they made us take calls. I was not ready. My first call was sorta complicated but I got through it with my trainer, Joel, pointing out what to do and where to go. I cried when I was done with the call because I didn't know what I was doing. The rest of my calls that day got progressively worse. My face started getting tingly on my leftside, my nose was super itchy, and I was slightly dizzy because of all the elevator rides to meetings and the training room. By the end of the day I was feeling pretty crappy and dizzy.  Thankfully, Matt drove me home.
I did debate quitting, but I decided to give it another shot. So next day I had a meeting with Joel to explain my MS and he was very understanding and accommodating. Most of my phone calls were normal orders that were easy. *Happy Dance*
Thursday started out fine. Had a mix of easy and complicated calls, but I was handeling it okay. I took the stairs as much as I could for the meetings until the last meeting. I was stuck on a call that made me late for my break and the meeting. One of the trainers, Tanya, waited for me and Rose and we all rushed to get to the meeting. I decided to do the elevator because I didn't have time for the stairs. I was a little dizzy when I stepped off the elevator but it went away during class room time.
Once we were done, I figured I would take the elevator back up since the last dizzy spell wasn't that bad and it went away pretty fast. I was horribly wrong!
I was so dizzy when I stepped off the elevator that I had to grab a chair to steady myself. Tanya and a fellow trainee helped walk me to my desk. I reasured them I would be fine and it would go away. I was again, horribly wrong.
I sat down and the spins went in to hyperdrive. I put my head between my legs hoping to make it stop. It wasn't working. I carefully went to get a drink of water from the bubbler and the supid thing sprayed me in the face! So I went to the bathroom to clean myself off and the spins hit me again.
A fellow employee saw me holding on to the wall to stay standing. she helped me out of the bathroom and got a manager who walked me back to my desk since I kept refusing any special treatment. I just kept thinking it would go away. Again, Wrong. Wrong. Wrong!
I put my head between my legs and noticed my hands were shaking too. Tanya asked me if I was okay and when I looked up, she gasped and said, "Oh my gosh you are white!" and ran to get the emergency response team that is on call at Grainger.
When I heared the anouncement, "Emergency response team needed in the training department." I started to cry. I was mortified! I was suddenly surrounded by, what I was later told, 8 people. It felt like everyone was staring. I had a woman named Rachael that came all the way from Ariens. That is on the otherside of the building! Grainger is huge!
Thankfully Karen saw someone looking for Matt and knew it was me that the announcement was for. They couldn't find Matt so she came over. I was so thankful to see a familiar face. As soon as I saw her I started signing. I was a mess and it was nice to be able to express myself since my mouth wasn't working too well. She ran and got me water, and stayed with me until Matt arrived.
I was taking to a conference room for some privacy. Karen got my glasses for me that I had left at my desk, and she had to put them on my face because my hands weren't cooperating - weak and shaky. I just kept praying it would all go away.
I didn't want to leave work since I only had 1 1/2 hours left, but I knew I couldn't take calls. So they just had me do some certification training that we have to do for the EPA. At least I was doing part of my job. It was so hard to concentrate that I'm going to have to retake it tomorrow. Whatever, I was just trying to make it through the day.
I'm home now and I feel better. My hands stopped shaking and the dizziness is minimal, but not totally gone. I'm hoping my ability to talk normal will be back by tomorrow.
Praying a good night sleep will help..